MF transplant update - discharged from BMT unit and back home

[Simon96]

Hi All, delighted to report that I am back home from my local BMT unit and will now be treated as an outpatient. Still along way to go.

A bit of background... I was diagnosed with primary myelofibrosis, JAK2 V617F, normal cytogenetics, at age 35. Health declined this year and decided to go for an early bone marrow transplant at age 57.

The pre-transplant checks went well and commenced conditioning with fludarabine, busulfan and rATG, while sharing a room with another patient who was soon to be discharged. His discharge did not last long and he returned. Turned out that he contracted influenza in his brief time away. He was whipped into isolation and I was but on a course of tamiflu just in case.

During my stay I developed a lower respiratory tract infection and also had a small stroke. The infection was a nuisance as I was continually coughing up muck and also dealing with a running nose. Had a few quite miserable nights. The stroke has affected my eye sight with flashing and double vision. Apparently my brain will resolve that over the next few months by itself. It is amazing how resilient the brain and body are. I asked if that meant it was a TIA. Emphatically told no, it was a stroke and as such I was restricted from driving etc for a period of time. Not that I would anyway.

For me the largest challenge was eating and the accompanying nausea. My appetite completely disappeared. It became a significant mental challenge. Very weird and I now have a profound sense of empathy for those suffering with anorexia. On the bright side the nausea was very clean and quick. The nasal feeding tube that I dreaded so much before I started turned out to be my best friend.

While my description above may sound bad, overall my experience so far has been much better than I expected and well worth it so far. Very pleased that I made the decision to have a transplant.

Cheers, Simon

p.s. My advice to anyone about to start a transplant - establish a daily routine early in your hospital stay by getting dressed, making your bed before breakfast, eating something, planning what to eat throughout the rest of the day, cleaning your teeth after every meal and doing gentle exercise. When times get tough, remind yourself of the pattern and try to keep things up, even if you only capable of doing a very little. For me the best part of the day was shower time and something I look forward to and used as a reward.

[ksos]

Congratulations! Going through a transplant is quite a success -- a close friend of mine did one a few years back and was also glad she made that choice. Sounds like you had a good team and strength on your side. I'm so glad to hear how well it went. Wonderful!

Kim

[Simon96 in reply to ksos]

Thanks ...Simon

[Paul123456]

Thanks Simon, wishing you the very best for a speedy recovery

Please keep us updated if you are strong enough.

Best Paul

[Simon96 in reply to Paul123456]

Thanks Paul. Wow it has been 6 days, I had intended to reply much much earlier but haven't had the energy and the days have just slipped by. Great to read that you have been very pleased with your Peg progress. Will add an update below.

[piggie50]

Thank you for sharing your experience Simon. I hope you go on to make a speedy recovery.

Very best wishes

Judy

[Simon96 in reply to piggie50]

Thanks Judy

[mhos61]

Hi Simon,

pleased to hear that you are home.

Your post sounds very positive considering what you have been through which will go a long way in your recovery. Very inspirational too for anyone facing the prospect of a future SCT.

I wish you well in your recovery.

Mary x

[Simon96 in reply to mhos61]

Thanks Mary and thanks for the many kind words you regularly write.

[Mazcd Partner MPNVoice]

Hi Simon, many thanks for sharing this with everyone, keep well. Maz

[Simon96 in reply to Mazcd]

Thanks Maz. You too. The real story I wanted to share here when joining was that of young PMF'er who had been fortunate to live relatively well with MF for over twenty years. Nice to be able to continue the story with a hopeful future.

Thanks also for all the work you do for all of us.

[Timjonze]

Very pleased to read this and I must say I don’t think I’ve ever heard someone describe a stroke in such a breezy way before! Well done to you and please keep us updated!

[Simon96 in reply to Timjonze]

Can not resist misquoting Mr Spock... It's a stroke Tim, but not as we know it.

I have none of the classic symptoms that I associate with a stroke... droopy smile, weakness on one side etc.

I was lucky. A senior registrar had asked me to be a patient for a training session for some junior registrars while I was in the BMTU. Like many on here I have been a training/exam patient for ages. Anyway, by good fortune he happened to be the weekend duty registrar a couple of days after I left the BMTU. His prior rotation had been in the neurology department. When I described my eye sight issues he went and got his own personal neurology kit and gave me a thorough neurological examination. He then spoke to the consultant on weekend duty for the BMTU, who happened to be a big gun on the medical staff. He convinced her to go up to the Neurology department with him and convince them to do an unscheduled MRI. I have subsequently been sent to our newest hospital for a more detailed MRI.

Will add a more general update below. Cheers and thanks ...Simon

[karenmarie]

Hi Simon,

So glad your BMT was successful. I can't advise you about Fludarabine as it's my son who has been using it.

Take good care of yourself, keep well.

[Simon96 in reply to karenmarie]

Thanks Karen

[Betsywest]

Hi Simon, thanks so much for sharing your experience and glad to hear it was better than you were initially expecting. Well done you and wishing you all the best in your recovery x

[Simon96 in reply to Betsywest]

Thanks

[Aime]

So pleased it went well for you. You are obviously a very strong person and I wish you every best wish for your recovery. You need spoiling now. Thinking of you and your family. Kindest regards Aime x😺

[Simon96 in reply to Aime]

Thanks Aime. Actually it is my wife who needs spoiling. She has been taking very good care of me as did the wonderful nurses in the BMTU. Kind regards to you also.

[Eire66]

Great news Simon and so good to share your challenges with everyone. Getting a routine established seems such a simple thing to do but I'm sure at times it was very challenging for you. Everyday will see improvements for you wonderful news for you and your family. Many thanks for sharing your experience. Pat

[Simon96 in reply to Eire66]

Thanks Pat and all the best with your own MF.

[MFBMT2011]

Well done, excellent news and encouragement for others. Good advice at the end, I summarise it as be a person not a patient; and those showers are vital.

Welcome to the post SCT club. Now avoid illness and infection as they can escalate. I avoided visitors who even knew someone who had a cold/flu and also those wonderful little germ bags, children! Lots of hand cleaning etc. I enjoyed a walk in the park away from crowds.

You’ve fought the big battle successfully and must now sweep up and win the war. Good luck.

Chris (currently travelling from Lithuania to Poland on a 24 day trip through the Balkans)

[Simon96 in reply to MFBMT2011]

Hi Chris and also Jedi Chris,

- Be a person not a patient. I hadn't thought of it that way. Really like your summary.

Thanks for the timely reminder from both of you to steer clear of illness and infection. It is so easy to slip into bad habits at home and an area that I have been trying to pull my socks up on since getting both your replies.

Must confess to being a bit dumb prior to your replies. Much to the angst of my wife, I convinced her to take me to a cafe for a coffee after coming back from a checkup. I am not even a cafe person, just had a strong desire to get out and do something. She found one with no customers in it and whipped me out as soon as a group of customers came in. Later discovered that a young guy who left the BMTU at a similar time to me had the same urge and went to movies. He was back in the BMTU looking awful and having cultures taken due to a high temperature.

Once again thanks to both of you and Gary for being such inspirations to me!

[MFBMT2011 in reply to Simon96]

Comment inspired by family nurses who describe some people as entering hospital putting on pyjamas and climbing into bed as soon as they arrive! Also caught para influenza (baby version) in a cinema several weeks out even though I had tucked myself away from others. Wasn’t too bad but had to wait outside the clinic until all others had gone through so I didn’t pass it on. At least I didn’t get the ‘unclean’ bell to carry to warn of my presence.

[Ebot]

What great news. And a great post which I’m sure will help and inspire many. Here’s hoping your progression to good health continues apace. Wishing you the very best. Keep us in the loop!

[Simon96 in reply to Ebot]

Thanks

[ansaseeker]

Congratulations and keep well.what an achievement.

[Simon96 in reply to ansaseeker]

Thanks

[JediReject]

Well Done Simon, , as you may know I opted for SCT in 2015 for PMF as I decided to lived with it long enough. The support I got and continued to get from this Forum helped me enormously when the GVHD ramped up. Hopefully your experience of it will be at a much more modest level.

As my friend above Chris says try and steer clear of infection . Even now I will be wearing my mask during winter months when out and about though I have a real stinker of a cold, cough currently.

Very best wishes - Chris

[Simon96 in reply to JediReject]

Hey Chris, thanks for your reply and apologies for taking so long to get back to you. Please look 3 replies up where I have entered a combined reply for you and the other Chris. Best wishes ...Simon

[Stevesmum42]

Great news. So pleased all went well for you. Take care of yourself.

Best wishes Sandy

[Simon96 in reply to Stevesmum42]

Thanks

[lizzziep]

Good news. Best wishes for the future!

Lizzie

[Simon96 in reply to lizzziep]

Thanks

[Wyebird]

I do hope all goes ok for you. Thank you for sharing your ordeal with us.

[Simon96 in reply to Wyebird]

Thanks. I think it is more of as an opportunity rather than an ordeal.

[babbittybumble]

Hello Simon Please keep well and I hope your SC T will eventually see you much better Take care Bye Gill

[Simon96 in reply to babbittybumble]

Thanks Gill. I am trying very hard to do so!

[Bluetop]

Congratulations for getting through that and all the best. Thanks for sharing.

[Simon96 in reply to Bluetop]

Thanks

[socrates_8]

Really well done Simon. I really admire your strength and positive disposition in all of this. The simple routines you describe sound like good advice, as does your needing to steer clear of those wonderful little 'germ bags' Chris mentions above... Communicating those needs through your loved ones (& friends) I imagine could also prove quite a challenge...

Very best wishes in your recovery Simon.

Steve

[Simon96 in reply to socrates_8]

Hi my fellow Australasian MF'er from across the ditch, I have been quite brutal with friends and family and, apart from a momentary lapse by going to a cafe, have limited visitors to my wife and children both in the BMTU and at home.

Best wishes to you also.

[Heidi-W]

Wishing you well on your recovery Simon and thanks so much for sharing your story with us. You are very inspiring..

Best wishes Heidi

[Simon96 in reply to Heidi-W]

Thanks Heidi. Hope that new hip of yours is working well and thanks for the extra insight that you share with our community.

[Heidi-W in reply to Simon96]

Ah thanks Simon that's really kind. The new hip is behaving well so far -thanks

[isimmy]

Thanks for sharing this Simon. Positive news and a positive attitude.

Best wishes

Ian

[Simon96 in reply to isimmy]

Thanks Ian

[Wentry]

That's great news Simon even though it sounds like you had a bit of rough time during your hospital stay, I hope you continue to make great progress! Which city in NZ are you in and where did you have your SCT?

Best wishes,

Wendy

[Simon96 in reply to Wentry]

Thanks Wendy. In the South Island Bone Marrow Transplantation Unit in Christchurch. It is still in the old earthquake prone building that was supposed to have been replaced by now. The familiar story of building delays. The old unit and staff are lovely, however demand has outstripped its capacity. Access is difficult with the amount of building work in progress and the on going road works.

The first transplant in Christchurch for MF was performed in 2004. I think I may be the 8th. However I heard that second hand. Yet to confirm.

Hopefully my counts will have improved by the time you are visiting the South Island in January and we can arrange a meet up. Will pm you closer to the time.

[Simon96]

Hi All,

Thanks for all the good wishes. I am still doing well and enjoying my time at home. Not much energy. My counts dropped shortly after being discharged, with the key one of neutrophils dropping from a brief high of 0.8 to 0.45 then to 0.35

Haemoglobin still low, 66 last check. I am frequently getting a couple of units of red blood. I seem to need more blood than others, however they are being treated for different conditions.

In general I am holding steady. Still find eating a challenge, and am constantly looking to add calories where I can. The days have flown with half of my days since being discharged including visits back to the hospital for scheduled check ups and stroke investigations. So lovely to be home and working hard to stay here. Feeling much better than I thought I would when I first started. Onward and upward!

[Aime]

Great news. Hugs to you and your dear wife and family. Aime xx😺😺

[christiev]

Hello

Just catching up on recent posts and was thinking of you and hoping all going well

Best wishes to you!

[Cyprusfan]

How are you keeping Simon x

[Simon96 in reply to Cyprusfan]

Hi Hayley, greetings from NZ. I am keeping well, thank you. So sorry to read of your son's diagnosis of ALL. I hope his treatment goes well. Best wishes, Simon

[Cyprusfan in reply to Simon96]

Thank you Simon. It all seems so unreal .

[Timjonze]

Thanks for the update - really good to hear your experience has been positive (if understandAbly tough) so far. Good luck with making a full recovery!

[Simon96 in reply to Timjonze]

Thanks Tim